Objective To identify aspects of health-related quality of life (HRQOL) that are relevant to caregivers of individuals with traumatic brain injury (TBI) and propose an integrated conceptual framework based on this information. Design Nine focus groups with caregivers of individuals with moderate-to-severe TBI were qualitatively analyzed to ascertain the effect that caring for an individual with a TBI has on caregiver HRQOL. Setting Focus groups were conducted at three rehabilitation centers across the United States (Michigan, New Jersey, and Texas). Participants 55 caregivers of individuals with moderate-to-severe TBI Interventions Not Applicable. Main Outcome Measures Not Applicable. Results Qualitative analysis indicated that caregivers were most concerned about their social health (42% of comments); other important issues were emotional health (34%), physical health (11%), cognitive health (3%), and feelings of loss (9%; feelings of loss related to changes in the future/potential of the care recipient or related to the caregiver). Areas of concern that were discussed that were specific to the caregiver and not fully evaluated by existing patient-reported outcomes (PROs) included feelings of loss, anxiety related to the caregiver role (reinjury concerns, worry about leaving the person alone, etc.), and caregiver strain (burden, stress, feeling overwhelmed, etc.). Conclusion Although existing PROs capture relevant aspects of HRQOL for caregivers, there are HRQOL domains that are not addressed. A validated and sensitive HRQOL tool for caregivers of individuals with TBI will facilitate initiatives to improve outcomes in this underserved group.

The results from this research highlight that greater action is required to improve patient safety in mental health settings. This research has identified several potentially important future directions for improving patient safety in mental health.

Implications and future research directions are discussed.

Objective To develop a conceptual framework that captures aspects of health-related quality of life (HRQOL) for caregivers of individuals with military-related traumatic brain injury (TBI). Design Qualitative data from nine focus groups composed of caregivers of wounded warriors with a medically documented TBI were analyzed. Setting Focus group participants were recruited through Walter Reed National Military Medical Center (WRNMMC), community outreach and support groups. Participants 45 caregivers of wounded warriors who had sustained a mild, moderate, severe, or penetrating TBI. Results Qualitative frequency analysis indicated that caregivers most frequently discussed social health (44% of comments), followed by emotional (40%) and physical health (12%). Areas of discussion that were specific to this population included: anger regarding barriers to health services (for caregivers and service members), emotional suppression (putting on a brave face for others, even when things are not going well), and hypervigilance (controlling one’s behavior/environment to prevent upsetting the service member). Conclusion Caring for wounded warriors with TBI is a complex experience that positively and negatively affects HRQOL. While some aspects of HRQOL can be evaluated with existing measures, evaluation of other important components does not exist. The development of military-specific measures would help facilitate better care for these individuals.